Table 1. Reasons for Non-completion of Health Related Quality of Life Assessments and Sample Quotations.
| Themes and Subthemes | No* | Sample Quotations |
| 1. PATIENT TOO ILL | ||
| a. Patient too ill to complete self-report forms | 13 | “Patient has been extremely ill in the PICU, and although approached… on three occasions, she has not been able to complete it.” |
| b. Patient too ill to ask family to complete forms | 3 | “.. he was intubated for the majority of the first time point and hospital staff did not feel it was appropriate to give these forms to his family due to their great distress…as well as the patient was unable to complete the forms himself.” |
| 2. REFUSAL BY RESPONDENT | ||
| a. Active refusal because overwhelmed | 5 | “Parents indicated that it was just too much for them to do.” |
| b. Active refusal because too much work/too frequent | 2 | “The main issue I have had collecting the questionnaires is the frequency.” |
| c. Active refusal reason not specified | ||
| i. Respondent self or proxy report | 6 | “.. the patient was an active refusal (asked several times and declined to complete the questionnaires).” |
| ii. Parent does not allow child to self report | 2 | “.. the patients father stated that he did not want the child to do the survey, only the parents to complete…” |
| d. Passive refusal | 9 | “Parent approached twice but kept deferring.” |
| 3. DEVELOPMENTAL DELAY | 2 | “.. the patients Is severely developmentally delayed to less than 2 years old and nonverbal.” |
| 4. LOGISTICAL CHALLENGES | ||
| a. Forms lost | 6 | “.. I think they must have took the questionnaires home or misplaced them…” |
| b. Forms not given to respondent or uncertainwhether given to respondent | 5 | “Patient discharged from hospital and window for assessment missed.” |
| c. Unable to retrieve completed forms | 1 | “…he came down with a case of C difficile colitis while the forms were in his room to fill out and now they have been put into quarantine…” |
| d. Parent not available | 4 | “…parent is not here often…’ |
| 5. KNOWLEDGE OF STUDY PROCESS | ||
| a. Respondent knowledge of study process | 4 | “.. the patient did not fill out the form because they thought it was an extra form so they did not complete it…’ |
| b. Institutional knowledge of study process | 8 | “Site misunderstood the word proxy. Thought if patient can do It, parent doesn’t need to.” |
*
Number of comments received.